Self-management in condition-specific health: a systematic review of the evidence among women diagnosed with endometriosis

BACKGROUND: Endometriosis is a chronic condition, requiring long-term care as there is no cure. Self-management is the active participation of a person in managing their chronic condition and has been associated with improved knowledge, self-efficacy, performance of self-management tasks and some aspects of health status in interventions for other chronic diseases. The aim was to review the available evidence about the impact of self-management on condition-specific health among women with endometriosis. METHODS: The Medline, PsycINFO, CinahlPlus, Web of Science and Scopus databases were searched and PRISMA guidelines were followed. Search terms were entered both as keywords and mapped to individual database subject headings. Inclusion criteria were: papers that reported investigations of any approach to self-management; among women (at least 18 years) diagnosed with endometriosis and published in English in a peer-reviewed journal. All study designs using quantitative or qualitative methods were eligible for inclusion. Two reviewers independently examined the quality of studies using standard criteria. The systematic review was registered with Prospero (CRD42016042028). RESULTS: A total of 1164 records were identified (after duplicates were removed), and 27 papers, reporting 19 studies met inclusion criteria. Two papers reported findings from RCTs of complementary therapies, seven reported survey data and 18 qualitative studies. No study had investigated all elements of self-management. Women with endometriosis utilise a range of self-care activities and complementary therapies to assist them to manage their symptoms. Women reported both positive and negative experiences with health care providers. CONCLUSIONS: There is some evidence that self-care activities, complementary therapies and positive patient–healthcare provider relationships are important components of self-management for endometriosis. Self-management among women with endometriosis is an emerging field of research and no investigations of all elements of self-management, informed by a comprehensive definition and theoretical framework are available. Health and wellbeing outcomes and barriers and facilitators to self-management for women with endometriosis require further investigation. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12905-019-0774-6) contains supplementary material, which is available to authorized users.